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Undiagnosed; possible IBD or worsening IBS

On the referral of my new GP, I went to see a GI doc after she ordered an ultrasound for abdominal pain in my right upper quadrant that she thought was gallbladder related. However, the ultrasound did not show any stones - just a fatty liver due to recent, intentional weight loss. Because of the fatty liver and the fact that she could not find the cause, she wanted me to get a second opinion with a GI doc. I started seeing a specialist in May. He said that my fatty liver was most likely just coincidental because he could not feel the borders, so it was not enlarged. My liver enzymes, CBC, and other lab work came back within normal limits (including B12 and Vitamin D - though D was a little on the low side).

Anyway, the GI specialist sent me for an upper GI endoscopy to check for stomach ulcers since I was diagnosed with GERD when I was 16. He also started me on Prilosec OTC, but it was discontinued after a few days because I felt like I had a brick sitting in my stomach after I ate - it was painful. I suspect it was due to a lack of stomach acid. He also started me on Bentyl 10mg 3x a day for "unspecified abdominal pain" (according to my chart on my patient portal) and spasms/pressure/fullness in my RUQ. The Bentyl has helped, somewhat, but other symptoms are worsening. The endoscopy showed that my esophagus, stomach, and duodenum are all normal, except for some mild erythematous tissue in my upper stomach, which he biopsied for h. pylori - which was found to be negative. He also sent me for a HIDA scan - a much more comprehensive test to check for gallbladder and liver function. It was also normal with an ejection fraction of 50% after receiving the Kinevac.

After getting the results of the endoscopy and the HIDA scan, I was frustrated because I'm spending a lot of money on tests and getting nowhere with a diagnosis. When I spoke to the GI doc's nurse, she offered to get me in to see the doctor a few days early so we could discuss the next step - I was crying on the phone because I was feeling really bad (I had bad abdominal cramps and my fatigue had worsened). My boss gave me the morning off.

While sitting in the office, I was hoping that he wouldn't want a colonoscopy because I wasn't looking forward to the prep that my parents and grandparents had to do. Sure enough, he mentioned that he believed my symptoms could be bowel related and ordered a hydrogen breath test for SIBO and a colonoscopy to check for inflammation and other disorders. I just had the HBT done Friday and called the doc's office yesterday because of really bad cramping, bloating, gas, and diarrhea this whole weekend (I would rate it a 6 on the Bristol chart). I also asked if my test results were in and she said it was negative, but the doctor would review it. Imagine my frustration - another test with no answers.

The colonoscopy is scheduled in 2 weeks. Even though I'm not looking forward to it, I'm hoping it will give answers that I haven't found elsewhere. I'm really fatigued and my joints ache all the time. My GP tested me for autoimmune disorders like RA and lupus since my paternal grandmother and aunt have RA, but it was normal. My mom mentioned on Friday that she wondered if I have Crohn's disease since my symptoms sound somewhat similar to my aunt (related through marriage, not blood). It was odd because that was one of the ideas that ran through my head, but I didn't know enough about it. After reading some material through reputable sources, it does make me wonder, but it could also be diverticulitis since both my parents had it at one time. Anyway, I'll just be happy to get a diagnosis, FINALLY, and know that it's not all in my head. Not that I want IBD, but I do want someone to tell me that my symptoms are real.
 
Welcome. You have come to a great support group. You mentioned fatigue. Have you had your blood checked? You also mentioned about your joints aching. Have you been to a rheumatologist? I hope you get a diagnosis soon. Let us know
 
Welcome. You have come to a great support group. You mentioned fatigue. Have you had your blood checked? You also mentioned about your joints aching. Have you been to a rheumatologist? I hope you get a diagnosis soon. Let us know
Yep, all bloodwork was normal, including rheumatoid factor. I also had my thyroid levels checked because I have hypothyroidism and thought my medication needed adjustment, but it was perfect. I have no idea why I'm having arthritic-type pain in my joints, and neither does my GP or GI doc.
 

scottsma

Well-known member
Location
Tynemouth,
I know you're not looking forward to a colonoscopy BUT if it shows inflammation or anything else,you'll at least have a diagnosis and be offered meds to bring things under control.They will also take biopsies,which is a good thing,then you will know once and for all what ails you.It's the NOT knowing that wears you down,and stresses you out.You've come to the best forum for support and advice.Please keep us updated because your post will help others who are in a similar situation.Feel better soon.
 
I know you're not looking forward to a colonoscopy BUT if it shows inflammation or anything else,you'll at least have a diagnosis and be offered meds to bring things under control.They will also take biopsies,which is a good thing,then you will know once and for all what ails you.It's the NOT knowing that wears you down,and stresses you out.You've come to the best forum for support and advice.Please keep us updated because your post will help others who are in a similar situation.Feel better soon.
You hit the nail right on the head. I cannot stand the "not knowing" and it's driving me crazy not to know exactly what is wrong. Although I'm not looking forward to the actual procedure, I'm interested to see the results, which is why I reluctantly agreed to it. I think the doctor saw my face drop when he mentioned "colonoscopy" because it was the word I was dreading. I'm so modest that the idea of someone looking up my butt is really weird and uncomfortable, too. But, I was going to have to have one anyway somewhere down the line as I have a family history of pre-cancerous colon polyps. The countdown to the colonoscopy is exactly 14 days. :shifty:
 
You hit the nail right on the head. I cannot stand the "not knowing" and it's driving me crazy not to know exactly what is wrong. Although I'm not looking forward to the actual procedure, I'm interested to see the results, which is why I reluctantly agreed to it. I think the doctor saw my face drop when he mentioned "colonoscopy" because it was the word I was dreading. I'm so modest that the idea of someone looking up my butt is really weird and uncomfortable, too. But, I was going to have to have one anyway somewhere down the line as I have a family history of pre-cancerous colon polyps. The countdown to the colonoscopy is exactly 14 days. :shifty:
Sending support.
 

scottsma

Well-known member
Location
Tynemouth,
You'll be treated with the utmost respect.You'll be well covered and on your side.If you're offered sedation,then accept.if it suits you.You won't be asleep,but will be very relaxed.I chat away to the staff so much,I think they must wish they had given me a bit more to shut me up.Hahaha. Of course,you're family will reassure you too.I won't pretend the prep.is good,but it's only one day in your life,and is soon forgotten.Plenty moist wipes and maybe a barrier cream for the many bathroom visits.
 
You'll be treated with the utmost respect.You'll be well covered and on your side.If you're offered sedation,then accept.if it suits you.You won't be asleep,but will be very relaxed.I chat away to the staff so much,I think they must wish they had given me a bit more to shut me up.Hahaha. Of course,you're family will reassure you too.I won't pretend the prep.is good,but it's only one day in your life,and is soon forgotten.Plenty moist wipes and maybe a barrier cream for the many bathroom visits.
Well, the good thing is that it is at the same facility where I had my endoscopy done and I really liked the staff. They put me completely out for the endoscopy and I woke up about 10-15 minutes later with no recollection and I tolerated the sedative really well. My mom is taking me to the procedure, so that's a comfort. I was prescribed MoviPrep, which I've read is the best stuff for prep. I've already stocked up on wet wipes.;)
 

Maya142

Moderator
Staff member
I'm really fatigued and my joints ache all the time. My GP tested me for autoimmune disorders like RA and lupus since my paternal grandmother and aunt have RA, but it was normal.
It could be Ankylosing Spondylitis (AS) or some sort of Spondyloarthritis (SpA). Typical symptoms would include lower back and hip pain, but it could be any joint really. Morning stiffness is common and pain that gets better with activity is typical (so for example, for my daughter, sitting through a movie is hard but walking around makes the pain better).

CCFA has some good info about the various kinds of arthritis associated with IBD: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Even if you just have IBD, joint pain is common with that. Sometimes it's arthritis, other times, it's just pain (arthralgia). A rheumatologist is really the person to see if you're worried about your joints. Blood work cannot rule out SpA and neither can x-rays.

Spondylitis.org also has some good information.
 
It could be Ankylosing Spondylitis (AS) or some sort of Spondyloarthritis (SpA). Typical symptoms would include lower back and hip pain, but it could be any joint really. Morning stiffness is common and pain that gets better with activity is typical (so for example, for my daughter, sitting through a movie is hard but walking around makes the pain better).

CCFA has some good info about the various kinds of arthritis associated with IBD: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Even if you just have IBD, joint pain is common with that. Sometimes it's arthritis, other times, it's just pain (arthralgia). A rheumatologist is really the person to see if you're worried about your joints. Blood work cannot rule out SpA and neither can x-rays.

Spondylitis.org also has some good information.
That's interesting, because I have the same problems. I work a desk job from 8:30-5 and sitting all day long makes me ache all over, especially my hips and lower back. I have to get up several times a day and walk around just to feel better. I definitely need to get back into exercising again (I used to bike ride outside, but I have a stationery bike at home, too) because I'm sure lack of exercise is not helping. My fatigue is so bad, though, when I get home, all I want to do is rest/sleep. :(

My medical bills have been stacking up so much that the idea of seeing another specialist has me on pins and needles. I have an HMO through work and I've maxed the deductible, but not the out-of-pocket maximum.
 
Yesterday and tonight has been yucky. I didn't want to go anywhere or do anything and felt really fatigued, so I took a few naps. The first one made me feel even worse and I found out I was running a low-grade fever. I also had right hip pain, so I took some Tylenol. It didn't even touch the hip pain, so I took some Aleve (which my doctor told me to avoid, but I only took 1 pill), but even that didn't get rid of it. I decided to take another nap, but I woke up to find the hip pain still there. Now, it's nearly 3am and I cannot get to sleep. I am not happy. :(
 
Thankfully, I went to bed around 3:30am last night and woke up this morning with the hip pain mostly gone, which I'm grateful for since I hate missing church. :)
 
I'm starting to think that I somehow bruised my hip or something. I don't remember doing it, but that's what it feels like. Usually, it only hurts right in the joint area, but this goes down the side to my thigh. Weird.
 

my little penguin

Moderator
Staff member
NSAIDs like aleve can cause the colonscopy results to be questioned( even just one )
NSAID can cause bleeding and ulcers all on their own even without Ibd /crohns
So it makes determining the cause of what your Gi sees on the scopes harder to determine
Have you seen a Rheumo about your joint and hip pain ?
Please check out spondyloarthritis
http://www.spondylitis.org/Learn-About-Spondylitis
 
NSAIDs like aleve can cause the colonscopy results to be questioned( even just one )
NSAID can cause bleeding and ulcers all on their own even without Ibd /crohns
So it makes determining the cause of what your Gi sees on the scopes harder to determine
Have you seen a Rheumo about your joint and hip pain ?
Please check out spondyloarthritis
http://www.spondylitis.org/Learn-About-Spondylitis
I haven't seen a rheumatologist yet. I mentioned it to both my GP and GI docs and the GP thought it was trochanteric bursitis of the hip and it's in my chart now. My GI really didn't think too much about it at the time. However, if my colonoscopy shows evidence of IBD, I will mention it again and see if he thinks the joint pain is related.

My colonoscopy is in 7 days, so I'm starting the low-residue/low-fiber diet in preparation. I'm planning to go to the store this weekend to stock up on clear liquids when I do my prep on the 19th. :)
 
My colonoscopy is in 3 days. I just stocked up on several things that I can consume during the prep day - chicken/beef broth, popsicles (not red), coconut water, sparkling water, and some non-colored water flavor drops to help me get enough water. I'm planning to get some non-red Gatorade/Powerade tomorrow. I might even get some Jello as I want a lot of variety and I know I need to get enough liquids.

Anyway, my lower left abdomen hurts like crazy today and I'm not sure why. It almost feels like someone is twisting my insides and they feel bruised. Not sure if I ate something that didn't agree with me, but I'm definitely having more symptoms. I just took my afternoon dose of Bentyl with some Tylenol about 15-20 minutes ago, but they haven't kicked in yet. I hope to get a nap in soon as it usually (but not always) makes me feel better.
 
I'm feeling really yucky tonight. I felt like I had some gas in my abdomen so, quite frankly (TMI), I tried to fart it out, but noticed that my stomach hurt everytime I did. My right upper abdomen hurts again even though I took Bentyl. I just ate some dinner and I'm noticing that food does tend to worsen symptoms in my stomach area, so I am wondering about gastroparesis. I see my GI doctor this Friday and I'm going to see about getting a small bowel MRE and stomach emptying test. Hopefully, they can schedule it this month before my insurance runs out as we are switching insurance plans at work to a different company. If not, I may have to wait until my new insurance kicks in and go see someone at the research hospital. The thing I'm worried about is the wait time for appointments at the hospital. Hopefully, they don't have several weeks' wait.
 

my little penguin

Moderator
Staff member
Fwiw Ds has gastroparesis and bentyl worked for lower abdominal pain but made his gastroparesis much worse
Bentyl slows down things ( stops contractions of the stomach and intestine
Hope you can get in quickly
 
Fwiw Ds has gastroparesis and bentyl worked for lower abdominal pain but made his gastroparesis much worse
Bentyl slows down things ( stops contractions of the stomach and intestine
Hope you can get in quickly
Yes, I read that, too. I'm wondering if I should discontinue the Bentyl, but I'm also worried that the spasms will be uncontrollable and I'll feel worse. I'm pretty sure I have hypochlorhydria (low stomach acid) and gastroparesis. I never seem to have an appetite for breakfast because I'm either nauseous and/or still full from the night before. When my GI doctor gave me Prilosec, my stomach was so painful - especially right around the belly button - which disappeared after I discontinued it. I really hope to get in to see a doctor who specializes in motility disorders AND intestinal disorders.
 
I got into work with some of the worst lower GI pains I've had in while. I thought, at first, it was coming from my stomach so I was thinking it was related to low stomach acid, but realized it was lower than that. I then had an urgent need to use the bathroom, which made it better. I'm not sure if I'm constipated or if it's something else.
 
When I learned of the change in health insurance plans at work, I thought we were switching to a PPO, but it appears as if we are staying with an HMO - just a different insurance company than before. The good news is that my GP is covered, but my GI is certainly not and neither is anyone in his group. I did see quite a few names from one of the research hospitals in the area, but not the other one as it's not covered. :(
 
When I learned of the change in health insurance plans at work, I thought we were switching to a PPO, but it appears as if we are staying with an HMO - just a different insurance company than before. The good news is that my GP is covered, but my GI is certainly not and neither is anyone in his group. I did see quite a few names from one of the research hospitals in the area, but not the other one as it's not covered. :(
I am sorry. I hope you can find someone who is covered.
 
I am sorry. I hope you can find someone who is covered.
I'm going to research the ones that I found. I'm planning to look at those at the research hospital that are covered, but there's another group listed that I'm not familiar with. Hopefully, I can look at their credentials and figure out their specialties. I'm letting my GI doctor know tomorrow that I'm not going to be able to see him beginning September 1st. I didn't want to continue with him anyway, but at least it's because of insurance that I have to tell him, and not something personal...
 
I don't think I'm going to keep taking the peppermint oil. It's causing some really nasty cramping in my lower abdomen and bad nausea. I just had to take some Kaopectate to tame the tummy troubles as I have 2.5 hours left before I get off work. Something to tell the GI doctor tomorrow. He wanted me on peppermint oil for IBS and spasms, but it doesn't look like it agrees with me. :(
 
Good luck tomorrow. Hope you come out with more answers than questions.
Thanks, I hope so, too, but I'm seriously doubting whether this visit will actually reveal anything I don't already know. I'm already annoyed with my GI doctor because I don't like that he tends to brush off my symptoms as if they aren't serious. Anything he suggests or has suggested so far has been a band-aid not a serious fix and my symptoms are getting worse by the day. Today, I was so nauseated, I almost had to go home early. I forced myself to stay because there was only 2 more hours left and I'll be off tomorrow. I almost decided to cancel this appointment since I'm not sure I'll get a diagnosis before my insurance runs out and I'm forced to go elsewhere. :(
 
Hoping your GI might have some solutions for you, if not then I guess the move to a new one may be a blessing in disguise.
 
I attended my appointment, albeit reluctantly, and was not expecting the doctor do want to continue testing since all of the tests thus far have turned up normal/negative. However, I discussed with him the possibility of inflammation hiding in my small intestine and whether we should pursue a scan of that particular part of the GI tract in order to thoroughly rule out IBD. Surprisingly, he was on board and discussed two tests - CT enterography and small bowel follow-through. He wants to do the CT enterography since it's the best test offered by the practice and he knows of a very good radiologist that he wants to read it. He said the radiologist goes section by section and is one of the best in the country (of course, he could be biased...). He is going to have the office contact my insurance to get approval but said that the small bowel follow-through is the other option if insurance does not approve the CT scan. I told him about my insurance running out soon so I need to get in before the end of August and his nurse was adamant that she would get me in.

Of course, there were some irritating comments made including the usual "I think it's IBS." He wrote on my chart that it's severe IBS with diarrhea even though my usual scenario is constipation. Also, I mentioned gluten being a trigger and he said he saw no evidence of Celiac disease in my colon. Of course, I reminded him that I haven't eaten gluten intentionally since 2012 and wouldn't the inflammation go away if I hadn't been eating it (I know it would from having heavily researched Celiac disease). He apparently knows very little about Celiac disease since he said he would see evidence which is preposterous. Anyway, I know gluten is a definite trigger and I get ill when I eat it - even in small amounts.

His recommendations for the time being are to increase fiber intake, take probiotics, and drink enough (which I've been doing already). He also mentioned switching the Bentyl to Donnatal if the dietary recommendations don't do enough to help the symptoms. I'm not so sure I want to do this since it's a barbituate and has a sedative effect. I've only heard of it one time before - when I watched "ER" and one of the doctors prescribed the GI cocktail to a patient. I think it was in liquid form. I'm planning to wait until my small bowel scan before switching medications.
 
I just got back from seeing my GP a little while ago and updated her on all the GI stuff that has happened thus far. She was much more compassionate than my GI doctor has been and also understood that my IBS is mixed but predominately constipation (rather than what my GI doc wrote which was IBS-D). I told her about his plan to do a small bowel scan. Her suggestions were to take some samples of Linzess for the constipation and also gave me some samples of another probiotic called Align. I actually saw that in the store today, but it was so expensive that I didn't buy it since I didn't know if it would work or not. It doesn't seem like Florastor is a good idea since I seem to be reacting to it in a bad way - it's caused a series of facial breakouts which is typically a sign of something going on in my GI tract. However, my GI doctor told me to be on probiotics, so I'm hoping that this different strain will be helpful.

Anyway, I'm so glad that my GP is on my new insurance as I am really happy with how thorough she is and how well she listens. Fortunately, the reason for the visit - headaches that come during coughing - is nothing serious. She thinks it's allergies and not a sinus infection. I am to keep taking the Rhinocort spray and let her know if it persists. :)
 
Have you tried vsl#3 double strength - it's by prescription
Ds took it for over a year
But it has skim milk in it now ;(
No, I've never heard of it. My doctors have only said to take a probiotic so I have to by them over-the-counter. I'm hoping the Align will work, but it also has milk in it.
 

my little penguin

Moderator
Staff member
Oh and please push for the Mre ( MRI with entrography ) scan ( far less radiation than a ct scan )
Small biwel follow through was a ton of radiation - Ds had one prior to dx and since things move so slow through his Gi tract they maxed out on X-rays and still never saw his terminal ileum - head radiologist came in and tried
They then assured us whatever the problem was we could be sure it was CROHNS
--
I had no idea there even was a thing such as crohns then for kids


Guess what he had crohns and his terminal ileum was a mess - it showed thickening on the Mre given after the scopes at dx done three months later

So my faith in small bowel follow through a not so much

Hope you get answers soon
 

my little penguin

Moderator
Staff member
Regular strength vsl#3 you can get without a prescription but it's behind the counter
It's the brand that was used in the research papers to lower rate of cdiff and help uc
Pouchitis etc
Helped Ds rectum issues at the time
 
I wish I had more time before my insurance ran out to get some other testing done without having to pay an arm and a leg. My deductible resets on September 1st and so I have $2,000 I have to pay OOP before the insurance starts paying anything. I'm already racking up such a huge amount with procedures and doctor visits that I have over $1,500 to pay off. I'm just thankful I have insurance because I've seen how much these procedures are without it thanks to my insurance website.

Anyway, I've been heavily researching my options once my insurance switches over and it seems like my best bet is to transfer to a different GI group about an hour away from where I live. This really stinks, though, because I've been seeing my current doctor at the office less than 5 minutes away from my house. Most of the GI doctors on my new insurance do not get good ratings, which is not a good thing at all. I've been checking HealthGrades and the ones an hour away from me - particularly one at the practice - get better ratings than others.
 
I just got a call from my the imaging department owned by my GI group and they set up the CT enterography scan this week on Friday at 10:30am. I have to arrive at 9am to drink the oral solution and have the IV line put in for the contrast. Originally, the scheduler said I had an order for a gastric emptying study as well, but my GI and I never discussed this (I don't think it's necessary or warranted at this point because the endoscopy was normal with no food found in my stomach). She said it was another patient's order and it got mixed up with my file! Good thing I remembered! :)
 

my little penguin

Moderator
Staff member
Fwiw all of my son upper endoscopes ( all 6 of them )
Have been normal from a no food found sitting in them
This does not rule out delayed gastric emptying at all
I not suing you have DGE but your symptoms you list on here are a lot of red flags
And the only way to know is a gastric emptying test

Hope the CTE gives you answers
 
Fwiw all of my son upper endoscopes ( all 6 of them )
Have been normal from a no food found sitting in them
This does not rule out delayed gastric emptying at all
I not suing you have DGE but your symptoms you list on here are a lot of red flags
And the only way to know is a gastric emptying test

Hope the CTE gives you answers
I plan to mention it to the new GI doctor I see once my insurance switches over. But, for now, I'm just trying to figure out what's going on in my small bowel since that's where most of my symptoms are originating from. :)

I have felt so fatigued this afternoon that I nearly fell asleep at my desk. I have 45 minutes left before I can leave and I can't wait to get home, take a shower, eat dinner, and go to bed. The problem is that women's gymnastics comes on tonight at the Olympics and I hate to miss it, even though it's recording on my DVR. It's the women's all-around, which is one of my favorite events. :)
 
Hi, I have UC and have recently had Pancolitis due to being underbiopsied, under diagnosed and undertreated for a number of years.

I finally dumped my 2nd GI doctor and went to an IBD only GI specialist. This guy does world class IBD research and trains other GIs in IBD Fellowship placements.

He uses the Gold Standard test for 'GI inflammation'. It is called the Fecal Calprotectin test. Try to get it. It gives a score, which is great. Says more than just 'moderate inflammation' etc.

A normal Calpro score is *maximum* of 50. Despite being on all kinds of immune suppressants, anti-infalmmation drugs (Azathioprine, Pentasa, boatloads of Prednisone) my score was *still* ~400. 7x higher than normal. (Wish I could have been tested during my Pancolitis 6 months ago!

He will repeat it every 90 days on me while I take a newer IV biological he is studying called Entyvio (vedolizumab).

Try to get this test.... It differentiates IBD from IBS, etc.

HTH!
 
Hi, I have UC and have recently had Pancolitis due to being underbiopsied, under diagnosed and undertreated for a number of years.

I finally dumped my 2nd GI doctor and went to an IBD only GI specialist. This guy does world class IBD research and trains other GIs in IBD Fellowship placements.

He uses the Gold Standard test for 'GI inflammation'. It is called the Fecal Calprotectin test. Try to get it. It gives a score, which is great. Says more than just 'moderate inflammation' etc.

A normal Calpro score is *maximum* of 50. Despite being on all kinds of immune suppressants, anti-infalmmation drugs (Azathioprine, Pentasa, boatloads of Prednisone) my score was *still* ~400. 7x higher than normal. (Wish I could have been tested during my Pancolitis 6 months ago!

He will repeat it every 90 days on me while I take a newer IV biological he is studying called Entyvio (vedolizumab).

Try to get this test.... It differentiates IBD from IBS, etc.

HTH!
Thanks.
 
I got the results back from the CTE and they were posted online. It looks like IBD can be officially ruled out as nothing was noted in the scan to suggest it - no thickening, no inflammation, etc. The radiologist did, however, note that I had cysts in both my kidneys. My paternal grandmother once told me that she has polycystic kidney disease and it sounds like I have the same thing which is not surprising at all considering we share so many sensitivities and disorders. Anyway, I guess I don't really need to continue with the GI doctor if it is IBS, but it now appears I need to see a urologist. According to Mayo Clinic, PKD causes high blood pressure, pain in the abdomen and lower back (both of which I have), fatigue, and a swollen abdomen. All the symptoms make sense, but I didn't attribute to a urinary disorder. I have been noticing that my blood pressure has been on the rise lately - especially in the evenings and when they take my BP at doctor's offices (I thought it was "white coat syndrome" but happens all the time).

Wow, so weird to find out that I have another type of disorder entirely. This also happened with the ultrasound I had - they found out I have a fatty liver, too.
 

my little penguin

Moderator
Staff member
Glad you got some answers but you really need a nephrologist - they handle adpkd
There are two main types of adpkd both are genetic
One is relatively benign and causes high blood pressure
The other results in renal failure
A large portion of the population has the high blood pressure only version
There is no drugs to slow the progression of adpkd
Only treatment of symptoms
They found bilateral renal cysts on Ds on his original cte at dx at age 7.
So far no extra cysts and reasonable growth but they will not know for sure if it's adpkd until he reached age 30 or we do genetic screening ( not recommended since there is no treatment )
Yearly ultrasounds of kidneys after baseline to monitor growth of cysts
All family members that are adults a
Should have ultrasounds of their kidneys

https://pkdcure.org/resource/pkdchf-cystic-diseases-diagnosis-daily-living/

Good luck
 
Glad you got some answers but you really need a nephrologist - they handle adpkd
There are two main types of adpkd both are genetic
One is relatively benign and causes high blood pressure
The other results in renal failure
A large portion of the population has the high blood pressure only version
There is no drugs to slow the progression of adpkd
Only treatment of symptoms
They found bilateral renal cysts on Ds on his original cte at dx at age 7.
So far no extra cysts and reasonable growth but they will not know for sure if it's adpkd until he reached age 30 or we do genetic screening ( not recommended since there is no treatment )
Yearly ultrasounds of kidneys after baseline to monitor growth of cysts
All family members that are adults a
Should have ultrasounds of their kidneys

https://pkdcure.org/resource/pkdchf-cystic-diseases-diagnosis-daily-living/

Good luck
I'm pretty sure mine is the benign version because the cysts were small. I have been noticing a rise in blood pressure lately and didn't know what it was caused by because nothing has changed. I landed in the ER last night because I had right-sided lower back pain that was really sharp and DEFINITELY not musculoskeletal. The doctor ordered some bloodwork as well as a urine test and they didn't find anything like a stone or an infection, so I was told to follow-up with my primary care.

I just called the PCD office today and, when I told them what happened and what they found on my CT, the nurse got me an appointment right when the office opens at 8am. So, I have to come in late again tomorrow for work. My hope is that my primary care doctor will be able to prescribe something mild for the pain because I took Tylenol yesterday and this happened in spite of it. I don't want anything too powerful because I don't like that spacy feeling, but I definitely don't want to have to go to the ER this weekend or anytime soon because of more symptoms. :(

The weird thing was that I had a positive Murphy's sign last night when the doctor pressed on my right upper quadrant. While I've had pain and pressure inside, it never was tender before, so I'm going to have to mention it when I see my PCD tomorrow.
 
I posted this in the support group, but I thought I'd post it here, too.

I just found out yesterday that I need to have surgery for endometriosis. My GYN doctor did an ultrasound on my right ovary (where the pain was) and my uterus. My ovary looks normal (although it had more than one follicle growing due to my PCOS) so an ovarian cyst has been ruled out. He, however, said that the uterine lining was too thick for someone who was on Depo-Provera since it's supposed to be much thinner - which is why I'm probably bleeding so much. My paternal grandmother had endometrial cancer at 67 (she's now 81) so he wants to go in laparoscopic and take biopsies of the tissue to confirm endometriosis as well as rule out cancer and uterine fibroids (he thinks it's endometriosis, but he is thorough). He also wants to do a D&C to remove the lining. He asked if I was planning to have children (I'm 33 and unmarried with no prospects) and I said I didn't know, but it's possible, otherwise, he would have offered an ablation (complete destruction of the uterine lining which stops endometrial tissue from growing). He gave me Tylenol 3 (acetaminophen with codeine) to take for pain. I'm supposed to call the scheduler today to set up pre-op labwork and the date of the surgery. It's an outpatient procedure, which is good. I don't know how long the recovery process is, but it's probably a few days. I know D&C's cause cramps - my aunt had one a few years ago for abnormal uterine bleeding according to my mom.

I know that surgery has risks and sounds scary, but I'm actually relieved to have a doctor that takes me seriously. If it is endometriosis, it could potentially causing the GI issues because it can grow outside the uterus and onto other organs. I am so glad to have answers, FINALLY!
 
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